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For those that don't hang out on the stem cell board, or read the tons of dumb posts I have made in this infancy of the disease, I have been trying for a couple weeks to get approved for Dr. Burt's Mist stem cell treatment for my newly diagnosed MS.
I had several discussions today with the folks in charge of the study. The bottom line is that they told me to come get checked out, and then told me that they wouldn't take me for 6months. I must be on an interferon or copaxone for at least 6 months and get worse prior to qualifying. As I was wrongly diagnosed for the last almost 7 years, I haven't been on anything. It looks like interferons and copaxone are the only things that count, so I need to pick one and get over my fear of needles pretty quickly I guess. I am leaning towards avonex, as they all seem to have the same efficacy in the numbers, but this one only needs a once weekly injection. At least it would give me six months to get into some fundraising. Who knows, maybe it will work fine and I'll never get any worse. I am still really looking at this procedure, and hope it will get fast tracked between then and now. They did tell me that some of the insurance companies involved do cover a portion, but not all, of the costs. They wouldn't tell me if BCBS (mine) was one of them.
My problem is that I am both afraid of needles and a bit of a drinker. I hear further that avonex is tough on the liver.
Can I be a bit of a drinker and still take this? Which one would fit my criteria, or do I need to give up the sauce? Aside from hunting, fishing, and yelling at a jury, it is my solace. I am interested in any advice I can get.

Thanks

shucks

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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shucks wrote:My problem is that I am both afraid of needles and a bit of a drinker. I hear further that avonex is tough on the liver. Can I be a bit of a drinker and still take this? Which one would fit my criteria, or do I need to give up the sauce? Aside from hunting, fishing, and yelling at a jury, it is my solace. I am interested in any advice I can get.

With any of the Ifn-Bs you need to get your blood tested for liver enzyme levels periodically. If I remember correctly, the schedule is probably something like 1 month, 3 months, 6 months, 1 year and then once a year after that. Adding ethanol into the mix might increase your likelyhood of having problems. I really can't offer any advice there since I don't consume the stuff. However, I will note that n-acetyl-cysteine is good for the liver since it raises glutathione levels. It's used to counteract the effects of an acetaminophen overdose which causes fatal liver failure due to oxidative stress as the metabolites of acetaminophen use up the liver's glutathione. It could potentially be helpful in an ethanol+Ifn-B situation, but I don't know for certain. There have been several posts to the various forums concerning ethanol. You may want to try searching for those.

alcohol does not help MS. it worsens all the known nutrition issues in ms patients. zinc is an important one that is affected by alcohol consumption. its depletion is linked to cirrhosis in the literature.

Abstract
The effects of dietary deficiencies of zinc and essential fatty acids (EFAs) or both on aspartate aminotransferase (AST) and alanine aminotransferase (ALT) were investigated in young growing rats. Four groups of albino rats were fed diets deficient in either EFA (4% hydrogenated coconut oil) or zinc (6 ppm) or both. The control diet was adequate in EFA (4% soybean oil) and zinc (100 ppm). The feeding trial lasted eight weeks and the activities of AST and ALT were determined in the liver and serum. EFA deficiency had no significant (p > 0.05) effect on liver AST. However, zinc and the double deficiencies depressed AST activity in the organ. Deficiencies of EFA, zinc and their combination depressed ALT activity in the liver significantly (p < 0.05) with a concomitant increase recorded in the serum. The data suggested alteration in endothelial permeability of the plasma membrane and thus leakage of membrane constituents in the tissue studied. It is therefore considered that these deficient diets may affect liver tissue negatively in view of the role of these enzymes in amino acid metabolism.

i would strongly recommend that you consider asking the doc for a zinc test, to address any issues before making decisions about medications that affect the liver.

ps low zinc also equals low uric acid which equals high ammonia so if you're feeling ambitious ask the doc for zn, ua and nh3.

i have only found one study so far, where they tested the nh3 level in an ms patient. it's not a nice paper, but it would still be interesting to see the result of that test. even though i corrected my zinc deficiency and my ua normalized as a result, i think i will ask for nh3 next time i get a requisition.

I take 3 one a day multivitamins every day that give me over 100% of zinc, 2000 vitamin D and tons of other stuff. I'm a healthy guy except for My like for some booze and how much my lifestyle has changed since symptoms came up.

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

good that you're taking some stuff. how many mg of zinc does the bottle say is 'over 100%'? typically, multivitamins are aimed to help keep healthy people topped up.

they are not likely dosed to compensate for depletion from drinking alcohol, and consuming gluten grains, and high phytate foods such as nuts, grains, legumes and certain greens.

i believe the reasoning behind many ms diets cutting gluten and legumes is the effect on zinc status.

if your zinc is suboptimal, regular one a day vitamins don't tend to cut it. therapeutic doses, sometimes called megadoses, are then required.

i believe the recommended daily amount of zinc is something like 10 or 15 mg. ms patients are typically advised to take 25-50mg of zinc per day. when i was found to be zinc deficient my doctor had me on 100mg zinc per day for a month.

As my girlfriend is hypoglycemic, we limit our total carb allowace, minus fiber, to 100 or so grams a day. I usually have a low carb bread sandwich everyday, but mostly we are meat and fresh veggies like onions,garlic,peppers, broccoli and some fresh fruit. Any of you guys have bad experiences with copaxone and come to your current treatment that way? I am really interested in being on the right diet as well. I dont know how we can go wrong with fresh meat from the butcher shop and fresh veggies every night.

I am leaning towards copaxone now, due to the similar efficacy to interferons and the fewer side effects. Any thought on the copaxone? Diet too for that matter. I like to learn all I can.

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

looks pretty good - you could consider reviewing the pro and anti inflammatory properties of your foods and keeping the score at least 50 pts on the anti-inflammatory side. sometimes there are surprises!

how often do you eat fish?

and, do you have a handle on whether you're getting enough vitamin e? vitamin e figures strongly in the klenner protocol. i recently read a study where they measured vitamin e before and after interferon treatment. the vitamin e level was low before treatment and normalized after.

(ps. vit e in multi-vitamins is usually actually bad, ie d-alpha tocopherol rather than a full E8 complex)

I live in a little house on a medium sized river, and we catch and eat a fair amount of fish. A friend of mine's wife made him sell their seconnd home, which was really a card playing weekend house with about 1200 sqft on a fair sized river lot. I bought it and we eat lots of catfish and a lesser amount of bream. My girlfriend likes store bought white fish fillets, so we eat them some too. River fish a pretty high in mercury around here, so we dont eat them everyday or anything.

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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